Thursday, September 30, 2010

I am sitting in the lobby of the veterinarian's office. I am with Chewie. Pleasant quiet music is playing. There is a tropical fish tank. The light is dimmed. We are waiting for his ear to be looked at. It's just me and my calm 110lb furry chicken. It is peaceful and relaxing here. I might spend the night. Chewie does not plan on joining me.

Tuesday, September 28, 2010

Recently I've been noticing more resistance from Cameron when I want or need him to do things. It's usually over things like holding my hand when walking in the parking lot, or putting him in his high chair for meals, or for wanting something that is not safe or appropriate for him to have in his mischievous little hands. They are short little outbursts with lots of pulling or tugging or pushing by Cameron and a fair bit of maniacal giggling because he knows what he's doing is not right. But it's always quickly resolved or he's easily distracted by something and forgets what he was trying to accomplish.

Tonight however was probably his very first full fledged tantrum. We were sitting in the kitchen, my husband and me sitting on opposite sides of the kitchen table with a boy in a high chair in front of us, trying to feed them dinner. Cameron had been sucking on a Pepperidge Farm Goldfish pretzel. He had been using the pretzel as a diversionary tactic to avoid taking the spoons of food that I was feeding him, a common trick the boys both use often. I took the pretzel away and put it on the table next to me. Instantly Cameron screamed "Want goldfish! My goldfish! More goldfish! No! No! No!" at the top of his lungs while kicking his chair and banging on the tray.

Yes, I caved. Instantly. Like a house of cards in a strong breeze. I immediately handed back that goldfish. And he bit a piece off and chewed it up and swallowed. And then he did it again. Very tiny bites, chewed 36 times each before swallowing. Until that pretzel was gone. Luckily between every two bites he let me feed him a spoonful of his puree and he managed to eat all 3oz of it before our 30minutes was up. *sigh*

It's not like that was the end of the world for me to let him just finish the pretzel, but if I let him just focus on the pretzel then it takes away from the very limited amount of time I have to keep him in the chair (no more than 30 to 40 minutes max) to get him to consume measurable sustainable calories including his milk. The whole meltdown only took maybe 6 seconds? With a lot of hands down holding and coercion and Blues Clues on the television it took all 30 minutes to eat one goldfish pretzel and 3 oz of puree.

I could have just said "Take three bites and then you can have it back" as part of the reward for eating but I didn't. The thought didn't even cross my mind until the moment had already happened and I'd already caved and handed back the pretzel. Typing this now I'm thinking of a dozen ways to have changed the outcome of that scenario. I must really be off my game, but the new begging and whinging behavior, the suddenness of the outburst, the conviction, the screaming with near tears really caught me off guard.

If that's a temper tantrum indicative of my future, and I'm guessing that was super mild, I am so, so, so very screwed.

Friday, September 24, 2010

At bedtime tonight we had some great entertainment to burn off the last minute pre-bedtime giggles. Drew was juggling bouncy balls which thrilled Evan. I'm quite sure that had he been wearing big boy undies instead of a diaper he would have peed himself silly while screaming "Guggling! Daddy Guggling!" Meanwhile Cameron would bring to me his Fisher Price radio,look at the buttons with a serious expression and say "Howbout...." (long pause) "Itsy Bitsy Spider song?! Here comes!" and then press the button to play the Itsy Bitsy Spider song. At this point he'd pick up a toy microphone and sing the song into it. We did all five songs on the radio this way, the whole family singing along while Daddy and Evan "guggled". So much fun.

Thursday, September 23, 2010

This morning Cameron grabbed a long thin scrap of paper we'd been playing with, lifted up my shirt and said "I plug you in, Mommy." And then he pretended to plug his paper feeding tube into my imaginary G tube mickey button. He did have a moment's pause looking around for my button and a quizzical look on his face when he didn't find what he knows he and his brother have on their bellies. It was a very quick moment and then he moved on to something else completely forgetting what just happened. It was our first encounter that he realized that I am different that him.

I took the boys to the eye doctor for their 2 year exam and it went amazingly better than it did the last time we were there when they were about 8mos old. They walked in on their own two feet, they were able to interact and show the doctor their ninja swatting skills every time he tried to put his hands near their face. I had to explain that this is because of their oral aversion. It was very interesting to see his ability to use thousands of happy meal toys (quite an impressive collection I might add, many were so cool I was playing with them for fun) just like the therapists do in the feeding program to get the boys to take bites. The doctor had never heard of feeding therapy like this and so we swapped techniques on toddler distraction for a few seconds while the boys tried their best to destroy his office. I love this eye doctor because not only has he seen the boys since they were 1lb and 2lbs and only a week old, he's just a really nice man who understands how kids, especially toddlers, work. If you ever need an awesome Pediatric Ophthalmology specialist send me your email to Taylo2Babies@gmail.com and I'll forward you his information.

The results of the examination are that at the moment we are officially free and clear of two of the primary prematurity eye problems, ROP (Retinopathy of Prematurity) and Strabismus (cross-eyed or wall-eyed). But we are definitely on track for the third and less worrisome of the three, nearsightedness. The boys had to have their eyes dilated and the exam confirmed that they are both slightly near sighted. (And as usual with almost all their medical stats, with the exception of size and weight, they are near sighted to the exact same degree.) Sure as hell could of fooled me, they seem to see EVERYTHING no matter how far or how close it may be. The doctor said that they are entering the "stabilizing stage" of child growth where their eyes will not change much for a long period of time. But he did say that they will need to come back in two years or right before they start pre-school/kindergarten so that if we need to get glasses that they can get used to wearing them before classes start. So it seems that it's likely, though not guaranteed, that they will both need glasses by the time they go to school.

This is not really a big deal at all. Everyone in our family wears glasses, so it seems inevitable that this would happen. I am just surprised that they might need glasses much earlier than I expected.

Tuesday, September 21, 2010

Every parent has those moments when they go in to check on their sleeping angels before going to bed only to smell something unpleasant and realize they need to wake the child and do a quick dirty diaper change. I just had a moment like this but it's not like what you'd imagine it to be.

Not 30 seconds after publishing my last post about not jiggling the babies when I hear a little cough from Evan over the monitor. I think, well it's almost the end of his feeding pump bolus right around the time he would puke in his sleep, so I better get up there and turn the pump off and give him a little break. I get in the room and he's sleeping peacefully. But I smell a very distinctive smell. Not the smell of poop. No, that would be easy. It's the smell of formula. Poor Evan is snoring away peacefully while laying in an enormous puddle of very cold formula. His diaper is soaked, jammies are soaked, blanket is soaked, the pillow is soaked, even the waterproof sheeting is soaked in ice pack chilled formula.

Despite having the lovely and wonderful sanity saving AMT clamp to keep the feeding tube connected to the adapter in his belly so that the tube won't pop out when tugged thus leaking formula all the time, we can't do a whole lot about the tiny medicine syringe port on the side of the feeding tube adapter. (see the tiny little spout on the side of the feeding tube in the picture above) From time to time this little button port will pop open and formula and stomach fluids leak everywhere until you stop it. I have no idea how much formula he did not get in his belly, but from the size of the mess I'm guessing it was pretty much his entire overnight feeding. Grrrr....

I just had to wake Evan up, strip him down, wash as much of the formula off as possible (elemental based enteral feeding formulas are a nasty concoction that are thick and sticky and smell very strongly), get him dressed, strip his bed down and replace all the bedding. At least he was too tired to wake up completely and so his crying stopped once I put him back down on a fresh pillow. Poor kid, it's just not his day.

Today I blogged about how if I say it out loud that the boys haven't puked in a while, they go and puke within 24hrs. But there is always a silver lining to every cloud right? Here's the silver lining from today's earlier post.

Evan has been very agressively trying to make himself throw up during meals, regardless of what we feed him, how fast or slow we try to feed him, or whether it's a solid (puree food) or liquid (milk, juice, water). He gags and retches at all the foods we feed him (nothing new or different or strong), and after the puke at nap time I was pretty certain that we were going to be seeing more puke with his increased attempts to make himself vomit during meals. And when I say increased attempts at puking I mean that two weeks ago he never attempted this kind of behavior, but as of this week he tries between two and eight times a meal to make himself sick. I will try to video tape his new behavior tomorrow during breakfast to show you how subtle this kid works. But our therapists from today's session witnessed it and both confirmed it was behavioral and not an illness or reflux.

So back to the silver lining part. Tonight Evan drank EIGHT ounces of whole milk and ate FOUR ounces of stage 2 lentils and rice puree. And then he threw up. But that's okay, he finished off another ounce of milk after he puked. That's a total of THIRTEEN ounces of heavy liquids/purees in his tiny belly. And the puke was likely triggered by his self induced gagging and retching as well as the fact that his belly has never been that full in his entire life.

And not to be too outdone by his little brother, Cameron ate three and a half ounces of sweet corn casserole stage 2 puree and SIX ounces of whole milk. That's more in one sitting than he's ever consumed in his life either. And luckily he did not throw it up.

Every time we have a series of days and nights without any episodes of vomiting for both boys I get excited and relieved. That is until someone mentions or asks how the vomiting goes and I have to tell them the truth. If it's someone who doesn't really talk to us very often I can just say "Oh, the same old same old one day at a time." and things go okay because that's how we live. But it never ever fails that when someone close to us, especially people very involved with the boys from a feeding and medical standpoint, ask how things are going with the vomiting and I really do have to tell them the details that the reprieve ends. Like clockwork. A switch is flipped and the flood gates open. We've gone almost a week without either of the boys vomiting in their sleep. Today at our feeding therapy session I was asked how things were going and I had to tell the truth because the therapists and doctors need to know, and inside as I'm telling her the latest improved trend on vomit in our house I can just feel the good peaceful naps and nights slipping away. Sure enough, at nap time today Evan threw up. Nothing out of the ordinary for us, but it was almost a full week of no vomit which has now officially ended. Back to the drawing board. *sigh*

Saturday, September 18, 2010

Thursday we had our three month post-discharge follow up with our feeding teams at the Mt. Washington Pediatric Hospital Feeding Day Program. It went better than I expected from a process standpoint. As any mom who's taken more than one kid to a doctor's appointment knows these kinds of appointments can be taxing from a logistics and behavioral and anxiety standpoint. But in rare form the boys were totally awesome, no tears at all, well behaved and generally happy despite that they were super tired and hungry. They did the physical examination and then we met with the majority of our feeding team. This includes one Nurse Practitioner from GI, one psychologist (because we'd just seen the Director of psychology the week before and he'd had another kid he needed to visit with at our appointment), one speech therapist, and one occupational therapist. Our GI doctor who is the director for the clinic and the clinic manager could not be there as they had some other things going on that day.

It was nice to visit with the group, I really like the people we are working with, and so do the boys because they were friendly and very talkative. So much so that the whole team was really impressed with the recent developments in their language and expressive skill and how comfortable the boys were to be around the team members in a close confined group setting.

Overall the boys are doing great, though not gangbusters fast track to our other GI doctor's (we actually have two GI doctors working on the boys) six month goal to have the feeding tubes removed. I'll talk more about that in a minute.

Evan's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. per report, continues to refuse all higher textures
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses)

Nutrition Per CDC Growthchart:
Weight - 11.5kg(23rd % for age) - *He was 10.9kg at the last day of the program, this is an average weight gain of about 6.5grams per day in the past 92 days. Impressive considering he got two very dangerous high fever viruses during these last couple of months.
Height - 85.5cm (7th % for age)
Weight/height - 66th%
Evan gets 1300 calories per day, the bulk of which still come from the formula through his feeding tube. But his goal was to maintain a weight gain for between 5 and 10grams per day, so we're all very happy about this, especially since we've been cutting back on the amount of formula he's been getting by 175mls to stimulate his hunger drive and willingness to eat by mouth. Seems to be working.

I'm very excited about this last weight to height ratio because when we started the program he was barely on the charts at all. It's probable that he'll never be the same weight or height as his brother, but then they are different people and started life in very different ways medically speaking. I'm glad that they get to be so obviously different since so many people, especially people who don't really know them well always seem to lump them together as one entity.

Evan still only eats volume from a spoon or straw. He will touch, kiss and lick pretty much any food you give him but if you ask him to touch the food to his teeth or to bite he will not try, and it is clear that he knows what you are asking him to do. We know he can do it, we know he has done it several times in the past, but convincing him to replicate those bites is darn near impossible.

Cameron
Cameron's 3month post-clinic follow up stats:

Evaluation Findings:
a. Consecutive sip/swallow with straw observed
b. Continues to accept small amounts of puree
c. Accepts higher textures by mouth (goldfish, crackers, etc) but actual processing and swallowing is minimal
d. parents continue to use feeding protocol at home successfully
e. difficulty with mealtime structure and routine (mostly due to recent illnesses but also because of behaviors)

Again, like Evan, Cameron is getting 1300 calories per day the majority of which is by the formula in his feeding pump. His weight at clinic discharge was 12.25kg which is an average weight gain of 6 grams per day over 92 days meeting the goal of 5 to 10grams per day. And since we've also been cutting Cam's formula back 175mls to stimulate hunger I guess it's working for him too.

Cameron is much more comfortable with biting and is starting to use his back molars for chewing, but we can thank teething his two year molars for that. He takes teeny tiny tweezer pinch sized bites of foods, and will only eat goldfish crackers if you break the fish up in to small pieces nothing bigger than the size of my pinky finger nail. And his very interested in our food, to the detriment of regular eating of his purees so that we can not present him with crunchy foods or eat our food in front of him or he will refuse to eat his purees. He will then only take minuscule bites and then chew on them forever and avoid eating the volume of food that he can consume via the purees. So it's not as simple as just offering him whatever is on our plate. He just doesn't eat enough to be measurable let alone sustain life.

As I've mentioned before our regular GI Dr. Safta, the doctor who put in the initial GJ tubes and later the G tubes, wants to have the feeding tubes removed in six months. She feels that if the boys are eating enough by mouth to maintain their weight and show some growth that it's okay to remove the tubes. Dr. Katz from the feeding program does not feel that's enough and I agree. His rules are that the child must be completely mouth fed including all medicines for a minimum of six months, that they show they can gain an average of at least 4 to 11 grams of weight per day for six months, that they must be able to go six months without any illnesses greater than a general head cold and not need the feeding tube to supplement their nutrition or fluids in any way during any illness, and that the tubes will never ever come out in the winter months because the risk of illness is much higher and if the child gets sick enough to need help from a feeding tube we'd be back at square one with the whole process including another surgery to put the tube back in. Based on Dr. Katz rules for removing the boys feeding tubes (which is no where near being able to call them "cured" of their eating disorder) there is no chance in hell that we'll be removing them in six months. I'm okay with that, just anxious beyond words for it to happen.

Thursday, September 16, 2010

Cameron loves a British cartoon called Kipper which he likes to call "Kipper Dog". It's about a brown and white dog and his friends and is really sweet and what I would call a calm cartoon since it's all soft spoken voiceovers with no shouting and screaming (like Dora or Diego) and the art is very simple. The theme music for the cartoon is a pleasant little jazz song. Cameron was apparently in the mood for some Kipper Dog music to dance to and found some to play on his toy piano. Problem was that he couldn't find the long version of the song, only the short version. Evan is running around and around on the slide having a great old time but not really caring about the music too much. I caught it all on video.

Wednesday, September 15, 2010

Words to bring tears to my eyes. For dinner tonight Drew was eating leftover sloppy joes. We had given a small piece of hamburger bun with sloppy joe sauce on it last night to Cameron and he'd nibbled it a few times. Tonight when he took one look at Drew's plate he screamed, "Cheeseburger Daddy! Pweeeeese! Pweeese Daddy more cheeseburger? Cah-men more cheeseburger pweese."

Monday, September 13, 2010

The boys are so observant and expressive now and are very aware of a lot going on around them. And they are getting so good at telling me what they want. Evan is now telling me "One too!" when he wants something, regardless of whether or not anyone also has that same thing. He just knows that he wants one of whatever it is, a toy, glass of water, a cookie, a ride on a scooter, too.

Cameron is fascinated by skiing now, much to his father's joy. He demonstrated his interest in the sport by grabbing the purple fly swatter off the hood by our trash can, placing it on the floor, and stepping on it sliding his foot forward saying "Cahmen skiing! Swoosh!"

In another moment of expressive demands, the boys have been using a new step stool to get to the bathroom sink for washing their hands. We typically keep that door closed because we just don't need to have them swimming in the toilet and are loathe to put a toilet seat lock on just yet. Cameron was trying to get in the bathroom and told his Granny "You wash hands? Wash hands Granny." When she said no, it's not time to wash our hands he replied, "I sad." It was only a matter of 24hrs and a single episode of Play With Me Sesame where Big Bird talks about opening a door that he'd figured out how to turn door knobs and open any of the doors in the house. Luckily the front door is a little heavy for him at the moment, but it looks like we're going to be forced to step up our baby proofing.

On the feeding front we're making very small strides in volume so the boys are getting back on track to eating two ounces of any stage 2 puree and consuming up to 4 and 5oz of milk, but very inconsistently. Occasionally Cameron will finish his 4oz of milk or 3oz of "monkey juice" (Danimals yogurt smoothie drink with a monkey on the side) and tell me "Milk all gone." and on one occasion he asked for more milk. I happily obliged but he didn't follow through with drinking the rest of the extra ounce I offered.

This weekend we made a trip to the Baltimore Zoo and as usual we had a fabulous time, despite poor Drew's allergies making him feel horrible. The boys walked the majority of the way around the zoo, but the stroller was still a necessity. They tire easily and if we want to get someplace pretty quickly the stroller is the way to go, especially since we have to carry around their feeding pumps and feeding toys and a double loaded diaper bag. The Baltimore Zoo is really nice, especially since the Whistle Stop eating area has been remodeled and there's lots of shaded areas to sit to eat. There are no high chairs or booster seats or air conditioned indoor area to eat, which poses a major challenge for us because our boys are so particular about eating. They can't be relied upon to sit still so we can feed them. They would run in a heartbeat so we have to have a booster seat to strap them down to or a high chair like the kind you see in a restaurant. And it's much nicer to feed them in a chair that's not their stroller because it's a real pain in the butt to keep the stroller clean and their posture is not the best for eating. Air conditioning wasn't necessary on a gorgeous day like today when the weather was a perfect breezy 77 degrees. But on hotter more typically humid Baltimore-style days in the summer months air conditioning means the difference between getting the boys to eat food and completely refusing necessary calories and fluids because they are already uncomfortable.

But the Baltimore Zoo is close to all our friends, is on the way to Mt. Washington Peds Hospital so I can take the boys there before or after appointments if there's time, and the parking is free. There's also a great playground jungle gym climber there which now that the boys are better at climbing up and hanging by their hands they can really enjoy. I also like that even on a slow day the volunteer staff were everywhere with animals in their hands or on their arms to show to the kids and they were very approachable and all of them were very understanding of a two year old's capacity for understanding and attention span.

Luckily today was a good eating day and the boys did well and it was really pleasant. There was hardly anyone at the zoo today and that was great for us. We didn't get to see too much because the animals all seemed pretty snoozy in their houses and the boys got pretty exhausted early due to walking more than usual. We only saw the polar bears, arctic fox and snowy owl, a couple of ravens, two hawks, a gecko, a turtle and a kookaburra bird that sang his special song just for us.

The boys are getting excellent at holding our hands and not letting go. But they are completely unreliable about staying put or trying to wander off or drag us in two different directions at the same time. And they don't really know how to walk a straight line, each always pulling and leaning to one side which either trips me up or makes one of the two fall down. But we're getting to the point where probably going to be walking most everywhere with them holding our hands in the next six months. Well, that or whenever they finally get that they are supposed to follow me no matter what and not wander off without looking where they are going.

Here's some pics from this weekend.

Old Navy has some of the best jammies this season. My little astronauts!

Cameron's got some big shoes to fill.

My little Pirates! The already know how to the pirate walk and talk. Aaarrrggg!

Here's some of the animals we saw at the zoo.

We visited the Kids Petting Zone to see the goats. Evan was mesmerized with how the goats were eating from the hanging bale of hay. He was so intrigued that he decided that he should see what was so tasty about hay and leaned in to sample a bite himself. At the last minute he changed his mind, but it was fun watching him think about what the goats were doing and see the little gears in his head turning trying to decide if this was something he should give a try.

Friday, September 03, 2010

The boys are really starting to become little people with more expressions and language. Thanks to our vacation in the Outer Banks Evan is now much more vocal and attempting more words, though they are still mispronounced and most of the time are missing the first and or last letter's pronunciation. But the key is that now he's trying to make himself heard and will pay attention to my mouth and imitate when I pronounce words, where before he was much more timid and soft spoken and gentle with his language and did not repeat or imitate at all. Both boys love to sings songs and are now singing along with us or the television which is so much fun. And this has led to a much more interactive and imaginative form of play between the boys.

They have not yet demonstrated any twin-speak, that secret language that infant multiples sometimes have that no one else can figure out. Instead they are playing chase or "I'm going to get you", playing peek-a-boo with each other, playing with blocks together, crashing cars together, climbing on the windowsill together, taking turns going down the slide head first.

The boys are playing more imaginatively with their toys too. At times throughout the day they will just wander off with a toy and sit quietly and play with that toy and I watch and listen. Evan's favorite thing to do right now is to build towers (only for Cameron to charge across the room and knock it down, which makes Evan laugh). It's taken a long time with lots of my building the towers and his crashing them to find that there's fun in building them as well as knocking them down. Cameron has not shown interest in building just yet but enjoys the crashing towers quite a lot. Cameron's favorite thing to do now is to play with his Little People action figures in their firetruck, dump truck, or pink airplane. He walks the people on and off the vehicle, flies them around, sprays water, has conversations about what is happening to the people.

Today I noticed a new social and developmental skill emerging which is fun, especially since both boys are struggling with a head cold that is making them clingy and more tired and they have been puking more in their sleep. Whenever they are sick I see less language and less developmental skills improvements, which is true for anyone who is sick and feels like crap but the delay is more pronounced for kids who have a chronic illness. If you were vomiting in your sleep through out the night for two years straight you'd feel pretty crappy and not perform at your best all the time too.

Today I noticed that the boys were very interested in lining things up to make a choo choo train. Cars, Geotrax train parts without the track, and little Matchbox/Hotwheels cars. We recently scored a ton of new toys from my older niece and nephew which included about 20 cars. I found that Cameron was "parking" the cars on the keys to their toy piano using the shorter "black/purple" piano keys as the lines in the parking lot. Evan was lining the cars up as though he was parking them on his parking garage and then racing and crashing them in a traffic jam on the ramp. This kind of play is a great sign of more fun things to come because they have been delayed in these areas for a little while and we have known it would come around but it is so much fun to see their own little selves finally coming out.

Cameron & Evan turn 0!

About Me

I'm a stay at home mom of surprise fraternal (we think) twin boys Cameron and Evan. They were born at 28 weeks 6 days due to Intra-uterine Growth Restriction (IUGR). We have struggled with global delays from prematurity, failure to thrive, feeding tubes, and re-learning to eat food by mouth. We're finally on the other side of the fence from our prematurity experience and I hope that something I write of our adventures in my online diary helps someone else struggling with similar experiences.